title: Patient advocacy organizations: institutional conflicts of interest, trust, and trustworthiness.
abstract: Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. Given their credibility and political clout, PAOs are often successful in changing policies, increasing research funding, and increasing public awareness of medical conditions and the problems of their constituents. In order to advance their missions, PAOs accept funding, frequently from pharmaceutical firms. Industry funding can help PAOs advance their goals but can also create conflicts of interest (COI). Research indicates that bias may occur, even among well-meaning professionals, when people and organizations have financial COI. Industry funding may therefore influence PAOs to act in ways that favor the interests of their donors, which may increase the risk of harm to patients. This article extends the analysis developed in the Institute of Medicine report, Conflicts of Interest in Medical Research, Education, and Practice, and applies the analysis to understand PAOs and their relationships with industry. It argues that the preferred goal of institutional COI policies should not be to promote trust, but to promote trustworthiness and appropriately placed trust.
authors.affiliation: Associate Professional Staff member in the Department of Bioethics at the Cleveland Clinic; an Assistant Professor at Case Western Reserve University; and a Lab Fellow at the Edmond J. Safra Center for Ethics at Harvard University.
authors.forename: Susannah L
authors.initials: SL
authors.lastname: Rose
mesh_terms: D016265:Conflict of Interest; D004345:Drug Industry; D006801:Humans; D008119:Lobbying; D009939:Organizations, Nonprofit / Q000941:ethics; D010344:Patient Advocacy; D012109:Research Support as Topic / Q000941:ethics; D035502:Trust; D014481:United States